With another unsuccessful trial off today, we have found that all means have been exhausted to overcome the deficiencies in Johnathon's anatomy. Our decision has been sent forward and agreed upon by Dr. Miles.
We are enjoying our remaining time with him as well as we can. Even as I type this sitting here listening to the rhythmic popping of his high frequency ventilator, memories of our good times dance in my head. I will never forget the first time he looked at me, the first time Becky saw him, his first attempt to cry, or his little smile he tried to force. He has brought many new and wonderful people into our life that we have built friendships with. Tonight I did venture into having an experience with him that only a Dad can have with his son by watching the Victoria Secret Fashion Show on TV with him. Though he was never really awake for it, it made me feel good to sit there holding his hand and trying to teach him about girls. As tough as his life has been, he has been a rock for me. His determination to try and overcome things has been well viewed by not only the staff here, but by many via the internet.
We are inviting you the opportunity to come spend time with him and with us. On Wed 12/5 from 3 pm - 6 pm and from 8 pm - 10 pm, we are inviting you to come visit. If you would like to come and see us please go to the 12th floor ICU family waiting room and have the receptionist call us. Remember this is not a solemn time. This is a time of joy as many parents do not get the time with their child as many have passed shortly after or during birth. For every one of Johnathon's 23 days (as of today) we have enjoyed him.
Our current plans call for a special time with our immediate families on Thursday and a private blessing to be performed by Erin (our Pastoral Care Chaplin at Children's and a new friend we have made). Becky will then be able to enjoy some time holding Johnathon for the first time, before the ecmo circuit is shutoff. Tomorrow I will post plans for his funeral as soon as they are arranged. Both Becky and I appreciate the support that we have received during this time.
We do know that several blood drives have been setup for Johnathon and we have asked that these still be performed as a memorial to him. The credits will be necessary to help re-stock the blood system here at Children's that Johnathon has come to rely on.
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23 comments:
I don't have words that can heal, but I do have ears that listen well-they're all yours. I will see ya'll tonight
Mike #76
Steven, Becky & family, I cannot make it in person but will be there spiritually. There are no words to help heal but faith, time and prayer will get you through. God Bless you all. Aunt Sandi & family
I will be there today to meet your son. My prayers are with you all.
Love
Mel
Although I will not be able to make it to the hospital in person, you will be in my thoughts and prayers.
I will continue to wear "JJ" on my helmet to celebrate the time that you have been able to spend with what sounds like a VERY special boy.
God bless you all.
Dustin "Green Giant" Nation
#96
Chilly I will try to make it tonight. You guys are in our prayers!
Coach Al
Becky and Stephen,
Our thoughts and prayers are with you and your family. Please let us know if there is anything that we can do to help you as you move forward.
love, Julie, Nick & Kaitlyn Thompson
Stephen and Becky - I am at a loss for words but please know our thoughts are with you today.
Kathy B
Stephen & Becky & J.J.,
You guys are so amazing. You have been through such an emotional rollercoaster, but you have kept a wonderful spirit through all the hardships. I SO wished and prayed things would turn out differently, but I am so proud of my teammate and his family, and the blessings they have shared with each other and with the rest of us. I know it’s not even close to being the same thing, but we have felt like we were part of it just by keeping up with the diary online. I had to tell Lana about the latest news with watery eyes. I am more sorry for you and Becky than I can put into words, but I would like to tell you guys how proud we are of you two for being such wonderful parents and such a strong family through some pretty tough times.
I’m glad JJ got to see the Victoria Secret models with his Dad. Every boy needs that life experience and Dad’s help in figuring out those perplexing creatures called Women. I am thankful that you two have had this time with JJ, and that he got to experience two of the most loving, wonderful parents I know. Lana and I will pray for you guys; pray that God will pull the hurt from your heart and just leave the good memories for you two to enjoy!
Ryan & Lana Smith
Komets #44
If I had a way to be there with you I would. I admire your strength and your commitment to each other and to JJ. You don’t see love and faith as deep as yours often. I and my entire family are praying for you Stephen, Becky, and JJ.
Margaret
I was forwarded your blog by a friend and have read the whole thing from July to today in awe. I've never met you (although maybe in passing around the rink) but you are truly an inspiration. I've smiled and I've laughed and I've cried reading through this.
I hope you find peace in knowing that you fought so hard for JJ, that you did everything you could, that you tried everything you knew how to try, and that you never gave up. We should all have such courage.
My thoughts and prayers are with all of you as you face challenges in the upcoming hours, days, and beyond.
Steven & Becky-
I really dont know how to express what Im feeling for you at this time-Im so sorry for what your having to go through. The only thing that is comforting at this moment is knowing that you have the strength to do what is best for your son- to end his suffering and let him be at peace with God. I admire you both so much-I will keep you in my thoughts and prayers.
Tracy @ Oak Forest
Becky & Stephen,
I've been following this blog for several months now, and I've prayed and hoped for a miracle. It's not what we had all hoped for, but there are those blessings that you got to be with JJ for awhile and that your story of strength, courage and faith has touched so many. My thoughts and prayers are with you and your family as you start to go through this difficult time.
--Jenn Daniel
Steven, Becky & Johnathan,
I have never met you, but learned of your situation from church. You have been insperational and a blessing. I want to thank you for the stength you have shown, and for the love you have demonstrated for your son. I will continue to pray for your family, and will take many lessons from you. Thank You.
Andrew Tanyaviriya
Stephen & Becky,
You all have been in my thoughts and prayers since day one. I've been quietly checking your blog on a daily basis to read the updates on Johnathan and how you all are doing. While I can only imagine that this is the most trying time in your lives, you've kept a level of strength and optimism that has penetrated me beyond belief. You three are the most incredible people I have ever come into contact with and I pray that God holds you close and you feel his overwhelming love always.
Take care of each other,
Kimberly
Your courage through such agony is an inspiration to us all. Your strength is admirable, as is your love for each other and for JJ. We pray that you will feel God's peaceful presence in the hours and days ahead. Thank you for sharing your story, it has touched so many lives.
Kim & Ricardo Meade
STEPHEN,
FEW WORDS CAN BE SPOKEN AT THIS TIME. THERE IS A SPECIAL BOND BETWEEN ME WHO HAVE HAD TO MAKE THE DECISION THAT WOULD IMPACT THE REST OF THEIR LIVES AS YOU HAVE HAD TO DO. I HAVE ALSO HAD TO MAKE THIS SAME DECISION. IT IS HARD TO FIND A FRIEND TO TALK TO ABOUT THIS THAT CAN TRULY UNDERSTAND HOW YOU FEEL AT THIS TIME. AT ANY TIME YOU NEED OR WOULD LIKE TO TALK I AM JUST A PHONE CALL AWAY. YOU, BECKY AND JJ ARE IN MY PRAYERS.
We learned about you thru our church. I gave blood, and was told that since I was O positive, that it would go directly to baby JJ. I was SO excited. As so many others have already stated, your courage and faith are truly an inspiration to SO many. Know that your precious baby boy will be in the arms of Jesus soon, and he'll be so content and PERFECTLY healthy in his heavenly home. Please never lose your unwaivering faith. Our prayers are with you and your family.
God Be With You-
Paula
Becky & Stephen:
I know my tears from a distance are nothing in comparison to what the two of you are feeling... But I also know how incredible it was to hold his little hand and to be in awe of the miracle....Such a huge impact for such a little baby... Thoughts and prayers with you... God will be with you...
Karen, Gary & Nicolaas
Stephen, Becky, and JJ, my prayers and thoughts are with you. We need to follow Johnathons example, he has shown great strength and perseverance and we need to do the same. You know where to find me when ever you need a break from the norm.
Alex
Becky, Stephen and little JJ:
You don't know me personally, but I go to school with a friend of yours, Ryan Smith. He recently told me about your dilemma and I wanted to send my prayers to you and your family. I, myself, don't have children, but I can only imagine the amount of overwhelming emotions that you are having. If there was any way that I could convey how I wish the best for the three of you in more than just words, I would do it in a heartbeat. From what Ryan has said of you both, you're the best parents a child could ask for. I'm sure JJ knows this by now and loves you both very much. I send my condolences and prayers to you and yours and wish only the best for you. One day, down the road, we will all be able to meet with little JJ. God has a plan for everyone and I'm sure he has a special place for him.
All my wishes and prayers,
Libby
I just wanted to let you know that I am praying for you and your family. I hope that you feel the love and comfort of God and his family. You are so special to me and I hope that you know that.
Love always,
Angie Stinson-Martin
Becky and Stephen,
My Church has been praying for you and your son for many days. What an angel he has been. His strenght has endured many trails, so has your's . WE love you. Thank you little sweet J.J. for bringing so much love to so many.
We may not be there in person , but our hearts and thoughts have been captured by all three of you.
Love Linda and Charlie Luersen
It was a real pleasure meeting your 'little-man' last night. You are both very brave and loving; you will see him again soon, standing strong and healthy before the King of Heaven and Earth. ~ Wil
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